FAXED April 4, 2005, 10:45AMThe Honorable Leland Yee, PhD
Speaker Pro Tempore
State Capitol, Room 3173
Sacramento, CA 94249-0012
FAX: 916/319-2112
RE: ASSEMBLY BILL 592
Dear Assemblyman Yee,
I am writing to urge passage of Assembly Bill 592, which clarifies protections for physicians who treat difficult or poorly understood illnesses.
As a Lyme disease patient, I am very aware of the need for such legislation in California. I live in Santa Cruz county, where studies show the percentage of ticks infected with Borrelia burgdorferi (the bacteria that causes Lyme disease) is significantly higher than most surveyed areas in California. There are enough Lyme patients in Santa Cruz to merit their own support group, yet there is not one physician in the county, that any of us have been able to identify, who is comfortable treating Lyme disease.
Without exception, the Lyme patients I know in Santa Cruz are forced to travel outside the county for essential medical treatment.
This discrepancy between the reality of Lyme disease in the county and the local medical community's response is typical of many other areas in the state. Lyme patients in California have a very short list of physicians to choose from, who are knowledgable about the disease and practiced at diagnosing and treating it.
CDC reporting data are said (by the CDC itself) to underestimate the real rate of new Lyme infections by a factor of 10. That puts Lyme disease ahead of AIDS as the fastest-growing infectious disease in the US. CDC data for California confirm that Lyme disease is common in many areas in the state, and additional evidence of that was offered to the State Assembly during the hearings that gave rise to lab-reporting of Lyme disease (set to begin this month, I believe).
Yet all across this state, patients like myself and novelist Amy Tan have been told by physicians:
"There is no Lyme disease in California."
The primary care provider assigned to my case under MediCal rules tested me for Lyme using an unreliable, poorly sensitive ELISA test last July, shortly after I was approved for SSI and became eligible for MediCal. That already made me more fortunate than many patients, who can't get to that initial step.
However, when the test came back "equivocal," with clear recommendations from the lab for further testing by culture or Western Blot, not only did this physician not follow up, he failed to inform me of the result, insisting that my labwork had come back normal.
At that time, I was being evaluated for cognitive impairment by the Aging and Memory Disorder Clinic at UCSF. In August of last year, one month after the equivocal ELISA test, the team of neurologists and psychiatrists who had tested me forwarded a request to my MediCal PCP for further Lyme testing. Again, he chose to ignore it.
Were it not for an out-of-state friend's doctor recognizing my symptoms as typical of Lyme disease, and sending me a lab order for a Western Blot, I would never have learned of my infection. My adult siblings have now had to assume the cost of my treatment by a Lyme-aware physician, one of a handful in the state.
It would be one thing if I had presented with mild symptoms, subject to broad interpretation. By the time I was approved for SSI and MediCal, however, I had been completely disabled by pain, fatigue and neurological symptoms for over two years. Over a period six months, beginning in the Fall of 2002, I went from working out at the gym three times a week and hiking on weekends to not being able to walk two city blocks. My health wasn't just sub-par, it had completely collapsed.
I was self-employed with my own computer consulting business, with special expertise in technologies used in digital photography and video-editing. Creative professionals and local businesses had come to rely on my ability to solve complex technical problems quickly. By March of 2003, however, problems that 6 months earlier would have taken me minutes to solve kept me stumped for hours. I could not remember appointments or even the names of my clients, and got lost driving to and from their homes - in a town where I have lived for nearly 20 years.
I lost my business, in which I had just invested several thousands of dollars, my entire personal savings. I was forbidden from driving by the local neurologist who tried unsuccessfully to diagnose the cause of my slowed cognition, impaired memory, and seizure-like episodes.
In March of 2004, neuropsychiatric testing by an SSI-selected physician revealed a wide gap between my overall intelligence (my IQ had dropped 60 points and was now at the low end of 'average') and my performance scores on specific mental tasks (many of which were sub-normal). This physician had also screened me for signs of primary depression, and found none. His report emphasized that the gap between my scores were indicative of an organic illness.
Those results were confirmed in follow-up testing at UCSF five months later. In short, I had lost not just my energy and stamina but a critical portion of my mental function.
Throughout the spring of 2004, the physical pain accompanying my illness grew more severe and relentless. By that June, I was bedridden with pain during the day and kept awake by it at night. One morning I woke up in agony, with the most intense pain I'd ever experienced radiating out from my lower spine. I could not move even slightly without wretching from the effort. I lay trapped in bed for close to two hours, over the course of which I lost control of my bladder and then my bowels. Only the need to escape my own stench got me lurching to the phone to call an ambulance.
It was a month after that I began to be seen by the MediCal PCP who refused to consider a Lyme diagnosis.
He took on a patient whose mind and body had both ceased to function, with a host of objective findings that indicated, in the words of my neurologist, "some organic encephalopathy." Yet when I asked my PCP specifically about Lyme, explaining that I was an avid hiker who'd sustained many tick bites, this physician told me:
"If what you're suffering from is Lyme disease, there's nothing to be done. Treatment is never successful at this late stage and costs a fortune. If you want that, you'll have to find a self-pay doctor, I will have nothing to do with it."
I learned later than in his notes from our very first appointment, the PCP had written "I will not prescribe antibiotics for this patient."
In October of 2004, the result of Western Blot, paid for by my family and performed by the acredited reference laboratory, Igenex, came back positive for Lyme disease. The result was unequivocal, positive even by the restrictive reporting criteria the CDC uses to monitor the Lyme epidemic.
When I reported this to my physician, he again told me, "If you want treatment for Lyme disease, you'll have to find another doctor."
With my families help I did exactly as the PCP suggested, and informed him of that fact. My Lyme-aware specialist contacted him to explain my test results and the need for laboratory monitoring, effective pain management, and other treatment support during what was likely to be a long and difficult regimen of antibiotics.
Two months later the PCP told me he was no longer willing to have me as a patient. The primary explanation offered was that I had chosen to seek treatment for Lyme disease.
His decision came one month after a third brain MRI, performed this time by UCSF, found that I had sustained brain loss and atrophy well beyond what one would expect to see in a man of my age (I'm 43). The following month, we learned that my body was producing less testosterone than an average 90 year old man's, and follow up tests indicated the deficiency was centered in my brain, rather than my testes.
Try to imagine yourself in my position, Dr. Yee. You have spent the last 2 and a half years of your life watching your health collapse and becoming incapable of meeting your own basic needs. One physician after another has noted signs of a serious, organic illness, but failed to reach a diagnosis. You have been terrified of dying or becoming permanently disabled from a disease that no one can even name.
Finally, laboratory results confirm a diagnosis that is quite consistent with your symptoms and their progression. The disease you've been diagnosed with is treatable. When you take steps to treat it, however, you are punished for that act by being 'fired' as a patient and left to fend for yourself. Now you learn that your brain is shrinking and no longer correctly regulating your endocrine system.
As I write this, Dr. Yee, I am waiting to hear back on my petition to the local MediCal HMO, requesting that the requirement for a local primary care provider be waived and I be granted "administrative status," normally reserved for patients dying of cancer or other terminal illnesses. There is a real question about how long my family's limited resources will be able to sustain my treatment. Despite having a treatable disease, with established, science-based remedies that are often successful, my prognosis is profoundly uncertain.
To me, the real question addressed by this bill is whether some lives are more worth saving than others. Will my state allow a disease that claims a quarter of a million new patients each year to be stigmatized and systematically under-treated? Will Lyme patients in California be relegated to the status of secondary citizens, and deprived of rights most take for granted? I suggest to you that if half the members of our state legislature, or their loved ones, were afflicted with this disease, action far more agressive than this bill would be taken. At the rate things are going, it may get to that point - by then, however, many of us will have suffered irreparable harm.
Please don't let that happen. Urge your colleagues to support this bill and further measures to give California's Lyme patients a fighting chance to regain their health and livelihood.
Thank you so much,
Paul Schaafsma
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